You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.

Mena

****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!

Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars

Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles

Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)

Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Tumblr is great for pictures. It requires searching around a bit to find blogs that you like though. Once you do find a blog or two that you like though, you can follow links from that blog to other blogs that might work for you. :)

This is my first post to this site. It's encouraging to me that other women are as distressed as I am about the loss of libido that seems to accompany cancer treatment. My mojo had gone from full speed ahead to seriously slowing down when the bc diagnosis came down a year ago. Since then it's died totally, completely. I am now NED having finished with lumpectomy, radiation and chemo including herceptin, and am now on anastrozole. (I think of anastrozole as the chemical castration pill since it kills all estrogen.) There are so many reasons (loss of health, loss of friends, etc) to be depressed about at my age (72) but now that I contemplate life without any hope of sexual pleasure again, it seems like the last straw. Oddly enough, lack of lubrication has never and still isn't an issue. I don't get that, but it's true. The big O was easy for me and our sex life was one of our marriage's strong suites. My husband has been kind about all this, but there simply is no sex life anymore. Please know that I am 100% grateful and appreciative for my current NED status. That, above all, is the most important thing. I just wish the quality of life left held more allure.

Trvier: Yup to both questions. Not very often. I kept hoping things would improve, but with the addition of anastrozole that's not likely, I guess. One of my doctors said that when there is no estrogen it's hard for there to be any libido. Also said that men experience the same problem when testosterone levels drop low. Hmmmmmmm.. . . .

I guess prostate cancer is the male form of breast cancer. I think my brother in law had that surgery to remove his prostate. But from what I have heard, my sister and him didn't have much sex anyway. They are not removing them as often as they used to. Like BC, many of the cancers are slow growing. They often over treat.

Trvler and Janett2014 - You are both right about prostate cancer. My husband went through prostate cancer and resulting surgery years ago. Since his father died from prostate cancer my husband decided to have surgery and I was happy he did. It did have the predictable results re ED but I have always admired my husband's good natured response in that he uses viagra and a pump (the guy loves, loves, loves anything mechanical) and on we go. Then there's me who now has zero libido and no abiity to O. But I figure if he is willing to try I need to do the same.The difference is that he can climax, I can't. So very frustrating.

Frizzy, I about 10 years younger than you and 11 year since Dx. I have zip, zero, nadda interest in sex. Absolutely zero libido or interest in trying. My poor husband is so deprived. I've been off AI's since 2007, so I can't blame it on them. With time, it has gotten worse... I guess the saying , use it or loose it is true. I hope you find some resolve.

i am extremy frustrated, angry and more about this. ER PR 90% positive so it is going to get worse. About 25% thru chemo followed by radiation and oophrectomy right after is written on the wall. This is gonna get worse. First one was right before chemo started. It was more of thank you DH for accepting me. Next one was after first chemo w condom something we had done just once. Chemo port restricted activities somewhat. Still searching for the magic potion

Did a little experiment by looking at other men young and old cute and ugly. To my horror, I did not feel anything at all. Pray to god who showed me a lot of miracles.

Before cancer I was very average on the sex drive continuum. So now that I've been through it all, I am worse. I do the quickie thing for my husband so he doesn't go without, but I definitely don't want to do it much. I know that we are going to have to make some changes so that we can stay close to one another. It's hard to feel like everything has changed - a port scar, no breast, short hair, incontinence, dry vagina, libido, etc.

Anyhow, last night I had a dream and I was in some kind of a store and there were these fitting rooms. I whispered to my husband "I am actually wet right now so we should do it". He said 'ok' casually, because as Seinfeld once said in one of the episodes, men are like firefighters...always ready to put a fire out. So I went into this fitting room with him and we were starting to do it. Today I told my husband this dream, as I think it's my third sex dream in about a year. So somewhere inside of me there must be a little kernel of spark...but it's so hard to find given all of the hits from this year. It's not just physical for me; it's hugely psychological too. Add to that that I'm raising two young children (10 and 7) and the house is pretty chaotic with them.

Sorry to vent...it just absolutely sucks that it hurts when I try to do it. I'll try the coconut oil I read about above.

Posey: I think having sex dreams is a really good sign. Please also try Astroglide if the coconut oil doesn't work. I tried coconut oil but I like Astroglide better. Also, someone posted an erotic literature site a few pages back and I have started checking it out.

This post is for all the ladies who have replied, in one way or another to my original post a couple of weeks ago (I'm not sure about the date):

As I read these very honest, very touching replies I feel so sad. I feel like crying, really. That's one half of my feelings. The other half of me feels incredible rage. Rage because I think this issue has never been given the dignity, consideration, empathy, determination to find a solution it deserves. Many of my friends have never had interest in sex so if their libido disappears they don't mind. I get that and, so long as they are happy with things are they are, I am good with it for them, too.

But that isn't my story, as you all know. As the years have rolled by there have been so many losses. . . . .deaths of family and friends, health issues, inability to do physical things like walking as long and as far as I wanted, etc. You all could add to that list, I know. But now that I have totally lost my libido, it seems like the last straw. It's absolutely infuriating that the medical/science fields rush to solve problems men might have regarding sex, but women's problems are all but ignored. Granted viagra solves a physical problem (the way I understand it) for men, whereas, I need both mental/physical problems addressed. They are linked. And that is a more difficult fix perhaps. But it's the attitude that infurates me. As though my feelings don't count, my opinions don't matter on this topic. So there is no advancement in solving this on the part of the medical community.

Excuse my rant, too, as others have said. The only thing I think I can do is tell my oncologist. I am going to do so next appointment. He needs to hear that most of my adult life I had a healthy, functioning libido. And while it's been waning over the past years, it truly 100% died over the past year. And now with anastrozole taken daily for the next 5 years I wonder if it accurate to declare it RIP. My oncologist has been wonderful through the breast cancer treatment, but I've never brought this up. It's time to at least declare my total unhappiness with the current situation.

Hi, I'm new to this post but SO HAPPY I found it, I went back through the forum about 6 months to catch up. I am so glad I am not alone with this issue. I am 14 weeks PFC and before I start tamoxifen I figured I'd get a baseline of my uterine lining. My GYN mentioned how atrophied I looked and had problems inserting the cathetor through my cervix for my hystosonogram which prompted her to ask how my sex life was. When I explained it, she said that if my MO clears it, she'd prescribe the vaginal estrogen cream. She said I should show my MO this article: http://www.acog.org/Resources-And-Publications/Com... By the way, she found a polyp I have to get removed in a couple weeks!

I'm intrigued by the coconut oil. So no safety issues with it being used internally? I think I've learned the hard way that if you don't use it, you lose it. I really appreciate all the tips on stimulation to bring the blood flow back. I almost was wondering if it was neuropathy!! Any of you from the fall have updates after switching products or trying any other suggestions? What worked for you in the end?

I haven't had any issues with coconut oil, oh, except once I was trying to scoop it out with my hand and some got caught under my fingernail and scratched underneath it. I use a spoon now. I actually tried sex without it and it just felt raw and uncomfortable. I'm seeing my gynecologist in a few weeks (also recently treated for BC herself), so I'll be asking her opinion. Hadn't heard about the atrophy measurements- that's good info to have. Good luck!

Falconer--my hystosonogram was to baseline the lining of my uterus before tamoxifen thickens the lining or gives me fibrous/polyps, not to measure any atrophy. That was just a side observation from her!!

Hi Molly, I'm the husband of a beautiful 11+year survivor who I still desire like the day we met! Unfortunately will her long journey, ovaries removed, she has Zero Libido and has difficulty feeling any emotions especially being able to cry. She's seeking help and Ive been supportive every step of the way. She recently has started using Gynatrof cream from Canada and we both hope this will help. Based on what I've read I would definitely give it a try!

I had been told never to put estrogen in your body or use any product that had estrogen in it at all. The point of estrogen positive cancer is to remove the estrogen because that is how the cancer started to grow. I would read all labels for anything before I would use them. I know that I have the same issues with like no drive at all I don't even like to hear the word sex because I just feel so broken. I have one boob,my hair is growing back so I look like krusty the clown trying desperately to grow my hair back. How on earth is that sexy. ? I just don't care to be seen and my husband is so wonderful. He just doesn't care. He is still loving and kind and hasn't skipped a beat, I feel like I need to care more about it, but it's like someone just un plugged a chord that my va jay jay was connected to!!! Wtf happened? Cancer happened I suppose. I just don't seem to ever have those thoughts anymore. I force them because he's amazing and honestly deserves better. I feel like a freak now. I don't even know where to begin to find my old mental take charge sexual being. Sigh I hate you cancer ~M ~

I suppose I rely on love for my husband and commitment to our vows to fill in where libido is lacking. I did not want to tell him about pain lest it lessen his enjoyment, but he eventually told me he suspected it. I told him I love him and I am not willing to give up our sex life to cancer. So now we talk more frankly and are a team. We work together to find ways to make things more comfortable for me. We actually agreed on a general schedule that suits both of us in terms of day, time, and frequency. Communication is very important. It took us quite a while to get to the point where we communicate enough about it, and now that we have, we feel closer. So there, stupid cancer!

I have been using Gyntrof or a few months now after learning about it here. it works really well keeping everything lubricated. It doesn't have any hormones - main ingredient is Hyluronic acid which sounds terrible but is not. You will still need something extra like astroglide etc etc etc for any "activities" but it is great for day to day.

@ChemicalWorld I think Gynotrof is very similar to the product you were asking about Repagyn (ai! these names! Who thinks them up?!)

Bottom line though is "use it or lose it" - good to keep active on the regular some way some how.